European specialists?

[Petra Ö]

Hello,

I am new in this group. My name is Petra, I am 46 and I was recently
diagnosed with PLD, but have not yet talked to a specialist here in
Sweden since we are waiting for the results from CT scan. The
information I have is that the cysts are "too many to count" and that
one of them is approx 10 cm in diameter. This one also seems to be
growing fairly quickly since my waist has increased at least 6
centimeters in as many months. I had my first symptoms three years ago
with a buring and aching sensation just below ribs on right side, and
the last year I have experienced difficulties with breathing at times,
fullness and sometimes pain. I also tend to have low grade fever 3-4
times a week, often feeling fatigued.

I maintain a very healthy lifestyle and have no other health issues,
but I will defenitely make some adjustments after reading your
terrific PLD diet. I dont drink coffe nor alcohol, but worry that the
1-2 liters of (green and white) tea I drink and the 3-4 small pieces
of dark chocholate I eat every day have affected the cysts in a
negative manner.

My question is if anyone knows of a specialist in PLD in Europe? I
understand that the Mayo clinic is where the best treatment in the US
can be found.

Another question is if there has been any research around acupuncture?
Or if someone here has tried it with good results?

Thankyou so much for running this supportgroup! I have also found you
on FB.


best,
Petra

[Janet Powell]

Hi Petra, welcome to the group. My son lives in Norway, he often goes shopping in Sweden . I am in the UK and have PLD and PKD. I am aged 50. I am treated at the Queen Elizabeth Hospital Birmingham. They do seem very professional and know a lot about PLD. I believe they are the biggest transplant centre in Europe. Dr Tripathi is the main consultant at Birmingham
 
The symptoms that you list are so typical of PLD. I have just recovered from a really nasty Kidney infection. I am currently waiting for a Liver/ Kidney transplant. 

Jan

 

> Date: Mon, 14 May 2012 07:11:31 -0700
> Subject: [PLD Polycystic Liver Disease] European specialists?
> From: petraos...@gmail.com
> To: polycysticl...@googlegroups.com

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[Petra Ö]

Great, thank you Jan!

Hope all goes well with recovery and that the wait will not be too
long. I am very grateful to have found this support group and able to
access all this information.

warmly,
Petra

On May 14, 9:02 pm, Janet Powell <mickja...@hotmail.com> wrote:
> Hi Petra, welcome to the group. My son lives in Norway, he often goes shopping in Sweden . I am in the UK and have PLD and PKD. I am aged 50. I am treated at the Queen Elizabeth Hospital Birmingham. They do seem very professional and know a lot about PLD. I believe they are the biggest transplant centre in Europe. Dr Tripathi is the main consultant at Birmingham The symptoms that you list are so typical of PLD. I have just recovered from a really nasty Kidney infection. I am currently waiting for a Liver/ Kidney transplant.
>
> Jan

>  > Date: Mon, 14 May 2012 07:11:31 -0700
>
>
>
>
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> > Subject: [PLD Polycystic Liver Disease] European specialists?

> > From: petraosterg...@gmail.com

[mde...@aol.com]

My mother and brother are also treated at the QE and I have spent many many hours there in the old hospital. My brother is under Simon Ball and mother under Dr Lipkin. It is the largest transplant centre in Europe certainly for livers.

 

Mark

[smith...@mac.com]

I am glad your family has found some specialists there who treat PKD and PLD. Dr. Sagaar Malik also has some interest in PKD. He is from the UK.

~Diane

[mde...@aol.com]

There are lots of PKD/PLD people in the city hospitals as it a common disease. It is unusual to get a GP who has renal unit experience so its a bit hit and miss.

 

Mark

[smith...@mac.com]

Thank you Mark, this so helpful as I am unfamiliar with UK medicine.

Warmly,
Diane